The rise of the visibility of autism is rapidly increasing. I was thinking…I was born in ‘85. Growing up, attending school, and graduating in ‘03, I’ve never encountered anyone (kids or adults) to have autism. So the question I was thinking is… when or why did this start? Was it an always-kinda -been? Just didn’t realize? Why does seem so many people have this?
I was born in 1971. There are autistics in my family, including me. It's a spectrum, and many of us from older generations were never diagnosed because we are high masking.
I think I’ve read a couple of articles about famous people born in the baby boomer and/or gen-x era, being high- masked. I think they described it as “putting on a suit”. I was required to take two psychology classes, so I could graduate college with a bachelor’s degree. Let me say from watching Hank Green on YouTube to Jordan B. Peterson and TED Talks, neurodiversity is an amazing thing.
Neurodiversity is amazing but also very tough to cope with on a daily basis. It's exhausting at times. I also have ADHD. I'm learning how to give myself what I need to thrive.
Because the high-support needs autistics were institutionaluzed, and the ones who did reasonably well for themselves were characted as "odd," "peculiar," "unusual," "strange," "weird," "different," "a character," etc etc. I don't intentionally "mask," so to speak, but sometimes it's just more pronounced than others. If you don't see me stimming, I come off as a fairly put-together, well-spoken, intelligent, pretty successful guy.
I'd also note there are of number of fairly prominent folks of your generation and older who've identified themselves as on the spectrum: David Byrne, Anthony Hopkins, Robyn Hitchcock, Leon Russell (it's discussed in his major biography), Juliana Hatfield (in her memoir), Kristin Hersh, Jerry Seinfeld -- I could go on. That you didn't see it when you were younger says more about your preconceptions of autism, and maybe your observational skills, than it does about autism.
I mean, I never saw an octopus when I was a kid. Where do octopuses we have now come from?
This is beautiful. I’m sorry, the situation sounds very challenging. Your son is blessed to have a staunch fighter and wise nurturer in his corner. Take good care of yourself. You’re right. We’re not long for this world, and everything shall pass. My son likes to say, “Mom, in geologic time, we’re already dead”
Allison... your words continue to amaze me, force me to think and feel, make me cry and laugh and remind me why you are such a treasure! "This too shall pass" has been our go-to salvo my whole life... and magically it seems to work! Sending you all my love, respect and support on this journey called life! Xxx Whitney
We try to keep on learning while, at the same time, we try to fully accept how things are today. Simple. But not easy. Thanks for your words and wisdom. ❤️
Beautifully said, Allison. You have a wonderful way of getting to the heart of things and helping us understand how we might cope with our own burdens. I am so grateful to be a tiny part of your Autotelic family.
Another thing I've thought about: you've mentioned you're troubled by thoughts about whether your age at pregnancy was a factor, and I think this is misunderstood. There's a lot of heritability at work here, and a lot of people I suspect to be on the spectrum themselves (albeit not necessarily diagnosed) just have kids at a later age. I suspect that many of these same parents, if they'd had kids at different ages, it wouldn't have made a difference.
(My sister doesn't register very strongly on the diagnostic measures, but there's stuff going on here...as a kid she ate spaghetti and french fries every meal if possible, I had to tell her I wasn't going to get in her car if she insisted on using a floss pick while driving, has an aversion to noise/light... She had her daughter at 39, the kid seems like she's pretty clearly a level 1, and I suspect, especially given what her husband's like, it's the genes and not age.)
As we have come to learn, people don’t need to be fixed. Of course, we should continue to educate ourselves to make wise decisions, but radical acceptance is sometimes necessary. It takes hard work, so I’m honoring the spirit of Labor Day, and soldier on.
I work with nonspeaking autistic adults and most of them would so appreciate what you are saying. They want to be "accepted, honored, ...be given space and time" to be who they are in the world in the way that you talk about your son. They don't want to be defined by their "behavior", diagnosis or what they are not able to do. I also appreciate how you are able to relate the experiences with your son to the broader human experience of dealing with the ups and downs of life and following the idea that "time flows like water".
My husband had me read your touching article. A friend of mine is on a similar journey as yourself, and I also know all children with autism are different. Her son has found some success with the Spelling to Communicate (S2C) with a letter board. There is a documentary called “Spellers”. I apologize if I am overstepping - but I am just sharing this program because he had such success after many years of not being able to communicate. Your child is so fortunate to have you as their advocate. My motto is one day at a time, and sometimes one hour at a time. You are exact in your description that time keeps flowing like a river.
I'm the parent of an adult autistic person and your book meant a lot to me - I know you know how and why. These lines today, "I finally realized it wasn’t to be fixed. It was to be accepted, honored, and my son was to be given space and time to make his way in the world, however he could make it." - yes. This has been my life's journey too. I'm privileged to be on this journey with my child, and it can be a very hard one. I'm grateful for others on the path with us.
The rise of the visibility of autism is rapidly increasing. I was thinking…I was born in ‘85. Growing up, attending school, and graduating in ‘03, I’ve never encountered anyone (kids or adults) to have autism. So the question I was thinking is… when or why did this start? Was it an always-kinda -been? Just didn’t realize? Why does seem so many people have this?
I was born in 1971. There are autistics in my family, including me. It's a spectrum, and many of us from older generations were never diagnosed because we are high masking.
I think I’ve read a couple of articles about famous people born in the baby boomer and/or gen-x era, being high- masked. I think they described it as “putting on a suit”. I was required to take two psychology classes, so I could graduate college with a bachelor’s degree. Let me say from watching Hank Green on YouTube to Jordan B. Peterson and TED Talks, neurodiversity is an amazing thing.
Neurodiversity is amazing but also very tough to cope with on a daily basis. It's exhausting at times. I also have ADHD. I'm learning how to give myself what I need to thrive.
Check out Nick 3.0 on Substack. He writes about his autis burnout.
Thanks!!!!
Some of them aren't masking, you just don't know what you're looking at!
Because the high-support needs autistics were institutionaluzed, and the ones who did reasonably well for themselves were characted as "odd," "peculiar," "unusual," "strange," "weird," "different," "a character," etc etc. I don't intentionally "mask," so to speak, but sometimes it's just more pronounced than others. If you don't see me stimming, I come off as a fairly put-together, well-spoken, intelligent, pretty successful guy.
I'd also note there are of number of fairly prominent folks of your generation and older who've identified themselves as on the spectrum: David Byrne, Anthony Hopkins, Robyn Hitchcock, Leon Russell (it's discussed in his major biography), Juliana Hatfield (in her memoir), Kristin Hersh, Jerry Seinfeld -- I could go on. That you didn't see it when you were younger says more about your preconceptions of autism, and maybe your observational skills, than it does about autism.
I mean, I never saw an octopus when I was a kid. Where do octopuses we have now come from?
Do you see the obvious fallacy now??
This is beautiful. I’m sorry, the situation sounds very challenging. Your son is blessed to have a staunch fighter and wise nurturer in his corner. Take good care of yourself. You’re right. We’re not long for this world, and everything shall pass. My son likes to say, “Mom, in geologic time, we’re already dead”
Allison: all the best to you. Sending love and hope
Big Luv Hug! Allison….your sweet voice, mystical lyrics, magnificent Mama, supportive sister, and huge heart are a gift to all of us who adore you….
Positive powerful vibes out to you…..
Allison... your words continue to amaze me, force me to think and feel, make me cry and laugh and remind me why you are such a treasure! "This too shall pass" has been our go-to salvo my whole life... and magically it seems to work! Sending you all my love, respect and support on this journey called life! Xxx Whitney
❤️🙏🏽🦋
We try to keep on learning while, at the same time, we try to fully accept how things are today. Simple. But not easy. Thanks for your words and wisdom. ❤️
Indeed, bittersweet indeed. 💙 💙
Beautifully said, Allison. You have a wonderful way of getting to the heart of things and helping us understand how we might cope with our own burdens. I am so grateful to be a tiny part of your Autotelic family.
Those "cure" books are a grift, preying on vulnerable, desperate parents. There's a pretty clear line to the RFK bullshit we have now.
Another thing I've thought about: you've mentioned you're troubled by thoughts about whether your age at pregnancy was a factor, and I think this is misunderstood. There's a lot of heritability at work here, and a lot of people I suspect to be on the spectrum themselves (albeit not necessarily diagnosed) just have kids at a later age. I suspect that many of these same parents, if they'd had kids at different ages, it wouldn't have made a difference.
(My sister doesn't register very strongly on the diagnostic measures, but there's stuff going on here...as a kid she ate spaghetti and french fries every meal if possible, I had to tell her I wasn't going to get in her car if she insisted on using a floss pick while driving, has an aversion to noise/light... She had her daughter at 39, the kid seems like she's pretty clearly a level 1, and I suspect, especially given what her husband's like, it's the genes and not age.)
As we have come to learn, people don’t need to be fixed. Of course, we should continue to educate ourselves to make wise decisions, but radical acceptance is sometimes necessary. It takes hard work, so I’m honoring the spirit of Labor Day, and soldier on.
I work with nonspeaking autistic adults and most of them would so appreciate what you are saying. They want to be "accepted, honored, ...be given space and time" to be who they are in the world in the way that you talk about your son. They don't want to be defined by their "behavior", diagnosis or what they are not able to do. I also appreciate how you are able to relate the experiences with your son to the broader human experience of dealing with the ups and downs of life and following the idea that "time flows like water".
Allison-
My husband had me read your touching article. A friend of mine is on a similar journey as yourself, and I also know all children with autism are different. Her son has found some success with the Spelling to Communicate (S2C) with a letter board. There is a documentary called “Spellers”. I apologize if I am overstepping - but I am just sharing this program because he had such success after many years of not being able to communicate. Your child is so fortunate to have you as their advocate. My motto is one day at a time, and sometimes one hour at a time. You are exact in your description that time keeps flowing like a river.
I needed this today. Thanks for gathering the time to write it.
You are good
I'm the parent of an adult autistic person and your book meant a lot to me - I know you know how and why. These lines today, "I finally realized it wasn’t to be fixed. It was to be accepted, honored, and my son was to be given space and time to make his way in the world, however he could make it." - yes. This has been my life's journey too. I'm privileged to be on this journey with my child, and it can be a very hard one. I'm grateful for others on the path with us.